[tri-med] Re: It was worse than I thought

I wanted to ask you some questions about Eleanor or another mom that their 
child has gone through the same. Now that she is sedated, does she try to fight 
the vent, meaning trying to breathe on her own trying to wake up? Because Kira 
today early morning tried to fight the vent got all agitated and had to bag her 
because her sats were very low, trying to pull out the tube.They also gave her 
a drug to paralyze her. Is Elanor on that too? I am very afraid that she is 
feeling pain, I also see her gag at times. I tell the nurses and they give her 
sedation medication, but I am so very afraid that when I am not there they wont 
see her gagging and waking up because she cannot make any kind of noise. Does 
Elanor gag also or does she try to wake up?
 
Yazmin
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and 
she loves to talk.


----- Original Message ----
From: Jennifer Vanderbeek <Phil46@xxxxxxxxxxxx>
To: tri-med@xxxxxxxxxxxxx
Sent: Wednesday, March 19, 2008 7:25:51 AM
Subject: [tri-med] Re: It was worse than I thought

Yazmin,
I know exactly how you feel.  Elanor is in PICU with flu, and is also
intubated.  My advice is to take advantage of the time she is sedated and
has her own nurse to rest yourself.  They emotional drain is exhausting, and
you can wear yourself out without even knowing it.  Don't worry, it makes it
worse!  At least she is able to rest and let the vent breathe for her while
she heals.  It is so hard to see your little one all connected to machines.
Trust in God and He will take care of her and you too.  My prayers will be
with you today...


Jennifer Vanderbeek
Boise, Idaho, USA
Mom to Arwen (10); Elanor (8), Trisomy 18; Caregiver to Joe (29), Cerebral
Palsy; and Wife to Andrew (I'm not telling how old he is because he's
younger than me!)

Check out Elanor's CaringBridge site at:

http://www.caringbridge.org/visit/elanoranne 



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Yazmin castro
Sent: Wednesday, March 19, 2008 12:28 AM
To: tri-med@xxxxxxxxxxxxx; trisomy10q@xxxxxxxxxxxxxxxx
Subject: [tri-med] It was worse than I thought

Kira is in the hospital, it turns out she has pneumonia. She is very ill,
today they had to intubate her because she was working way too hard to
breathe. I feel very depressed. I have never in all her hospitalizations,
felt as if there was a chance I would lose my baby. We are in the UCLA
medical center is a very good hospital with very good doctors. But if you
are the type that want to stay with your child all the time 24/7, it's not
that good for you because they don't let you sleep at your child's bedside.
So I am at home worried, calling the nurses but I also want to rest. I
really, really hope she gets off of the ventilator. I just can't wait to see
her smile. I leave everything to god I know my daughter is in good hands, no
one is greater than god.
Yazmin  
Proud mother of baby Kira (18 months)partial trisomy 7p and trisomy 10q, and
she loves to talk.



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